Thoracic Outlet Syndrome, Rib Resection, Recovery Stories?

Hello everyone!  

I have enjoyed reading about everyone's experiences with TOS - thank you all for sharing!

I was recently diagnosed with venous TOS and will be having first rib resection surgery on Monday.  I had suffered with arm/neck/shoulder pain and numbness for over 20 years.  TOS was "accidentally" finally properly diagnosed in July, due to an ultra sound ordered by a spinal surgeon, in response to my unexplained bruising /swelling/pain that occurred on my right arm/on my chest.  The ultra sound presented a multiple blood clots, which started under my arm, and ended nearly at my breastbone!  The surgeon said that the clots had been forming and accumulating for many years, and I am extremely grateful that I didn't have an embolism.  Now that the clots have been cleared, the next step is to remove the constricting rib.

I would be lying if I said I wasn't scared about what life will be like after the surgery, and am hoping someone who has been through this can help put my mind at ease.   I am someone who is always doing something, whether it be working, working out, gardening, cooking, landscaping, building furniture...the list goes on...so recovery is going to be a challenge for me to sit still and let my body heal. :-)

How bad is pain level 2 to 3 days after the surgery?  Did you feel somewhat better in 3 to 5 days, such as to go for a light walk out side?  Did walking up and down stairs bother you?  How long after your surgery were you able to vacuum/tidy up your home?  

Any other advice you could share?

Thank you!!
-Micah Strom
Wheat Ridge, CO

Ran Payan:
This sounds like exactly what happened to me. I had the rib resection surgery and everything went according to plan and I was so happy it was finally taken care of. Then I had a couple instances when my arm would swell and turn red, like before the surgery. I went back for a venogram, one month after the surgery. They said it was to make sure everything was functioning properly, and I had no doubt that things were anyting but perfectly fine. I was awake for the venogram and saw that the subclavian vein was still blocked at the same time the radiologist saw it. I was instantly crushed. I thought it was all behind me, but really I was in the same boat as before the surgery and still had a blocked vein. I had a couple of angioplasty procedures to try to open the vein, but they were all unsuccessful in even passing a tiny wire through the occlusion. It turns out that scar tissue had formed inside the vein from the repetitive pinching motion of the first rib, collar bone, scalene muscles, etc. No amount of therapy or stretching would solve this problem and my options were to either wait a long, long time until my collateral veins enlarged enough to take on the extra blood load, or vascular reconstruction. My surgeon wasn't comfortable with the reconstruction, so he told me that I would have to give up climbing and any rigorous activities that use my arms. He told me to go buy a set of golf clubs and to find other hobbies. I was very unhappy and unsatisfied with this option.
Long story short, I found one of the best TOS surgeons in the country that performed the vascular reconstruction and it was successful. My arm is back to normal. I feel like I have my life back and, more importantly, I am in control of my life. Yes, the path after surgery was tough and yes, it definitely comes with huge risks that you need to weigh because if anything goes wrong, it will easily affect the rest of your life. I was willing to take the risks.
I would strongly suggest getting another venogram, because if the rib resection properly unblocked the vein, you shouldn't have any symptoms, especially at rest.

Micah:
The recovery seems to vary from person to person from the first rib resection. I have talked to people that said their recovery was pretty hard; lots of pain, discomfort, cramps, etc. My recovery went rather smoothly. I had zero pain (no pain pills) and was walking in the hospital the night of the surgery. For my surgery, the surgeon went in through the armpit, so I had some very tight muscles in that area for a couple of weeks. However, if you are determined and motivated to do your physical therapy, the recovery should be relatively painless and short. After the surgery, I was up and walking outside every day. My wife was a huge help in helping with my recovery, as she was able to do many of the house chores and cooking while I was resting and recovering. It was at least a few weeks before I started doing some easy chores around the house because I didn't want to rush the healing process. I live in Boulder and had my rib resection surgery in Loveland at the Medical Center of the Rockies. I also talked with a surgeon down at Anshutz Hospital about the rib resection as well. Let me know if you have any questions!

Mitch

UPDATE:

Hey all, 5 days since my surgery and I am at home recovering nicely.  The surgery itself went very well, and I was released from the hospital the following day.  I am weaning myself off the narcotics as my pain is subsiding a little bit every day.  I started physical therapy yesterday, and will be going 3 times a week for 6 weeks, or until I'm back to normal.  I am doing basic mobility exercises at home, about every hour, to keep the muscles from "freezing up"...in addition to icing my shoulder/arm/incision area every hour, which is definitely helping with the pain.  I am also going on light walks each day, about 1 mile.  I am able to shower, dress myself, etc...more slowly than normal, but in time I am confident I'll be back to normal.  I hope to go back to work on Monday.  

Already since the surgery, my affected arm is a lot less swollen than it was prior to the surgery, and I do not have the numbness/tingling that I was experiencing.  I need to have one more venogram next week to ensure that the vein is still clear, and will be on anticoagulants for another 3 months.  My hope is that I'm in the clear and I can now focus on physical therapy and getting back into shape.

My surgeon is from Vascular Institute of the Rockies and they have been AMAZING.  I was really impressed with the care I received.

I'll update again with my progress in a few weeks.  Take care all!!!

Hi Mitch, thank you so much for your helpful and thorough response!  My surgery was postponed until September 6th, at Presby St Lukes in Denver...my surgeon has done hundreds of these procedures so I'm hopeful I will have a good outcome and can get back to activities quickly, after I'm healed up.  

I'll check back in with you all after my procedure, again - THANK YOU!!!!

Herman Breytenbach wrote:

Hi Sash , welcome to the TOS group . I had my left rib removed almost 20 years ago and my story started very much like yours . I was extremely active, swimming , Canoeing, climbing , cycling and had to stop all sports as a results of spasm in my neck, back and hand weakness . I can honestly tell you that a rib resection do help with pain management but you create other anatomical imbalances, which take years to settle and your arm/ neck never go back to normal . Try every possible alternative before going for the operation. Stay positive and good luck.

Hey Hermann,

thanks for your open words.Today i went to my physiatrist, who i haven't seen since a year, when i still had no clue that i have TOS. (back then he thought I had tendovaginitis in my hands and I was tired of getting prescriptions for treating that since i felt very clearly that my tendons were ok).

It was a very interesting and open consultation. He said i should postpone the surgery until January and made me a treatment-plan with 3 sessions each week until then. That's a huge load of PT and electro-therapy that i will have to go through... but i'm willing to give it a try.

Funnily, he said the surgeon i was assigned to is one of the best in Berlin. And my physiatrist was a surgery patient of him aswell, so he can judge that guy from both points of view. So if i don't see improvements until christmas, he would let me go to that said surgeon. But until then i will spend most of my after-work hours at his treatment room... Treatment plan starts at the 10th of September. 

Sash H wrote:

Hey Hermann,

thanks for your open words.Today i went to my physiatrist, who i haven't seen since a year, when i still had no clue that i have TOS. (back then he thought I had tendovaginitis in my hands and I was tired of getting prescriptions for treating that since i felt very clearly that my tendons were ok).

It was a very interesting and open consultation. He said i should postpone the surgery until January and made me a treatment-plan with 3 sessions each week until then. That's a huge load of PT and electro-therapy that i will have to go through... but i'm willing to give it a try.

Funnily, he said the surgeon i was assigned to is one of the best in Berlin. And my physiatrist was a surgery patient of him aswell, so he can judge that guy from both points of view. So if i don't see improvements until christmas, he would let me go to that said surgeon. But until then i will spend most of my after-work hours at his treatment room... Treatment plan starts at the 10th of September. 

Hi Sash ,

That is good news . Also try to get traditional chinese accupuncure, it is the best to relax muscles in neck and back area and last longer than any other treatments " in my case"  . It really help to get the nerve's firing again . i tried electro-therapy and various other treatments, which feels great for a day or so and then your back with the arm pain and muscle spasm in neck/ scapula . I tried a facet Rhizotomy, which was great . I did not feel pain for a period of 6 months after the procedure .

All the best with your treatment program, i hope it help to reduce the pain in your arm.

Another question along the way of recovery: Was there in the long term some kind of regrowth on muscle tissue that anyone experienced? At least partly?

Has anyone with venous TOS opted not to have the riv resection surgery? I feel like I'm the only one haha.

I am on a very specific exercise & stretching regimen combined woth rib mobs & tissue work by my PT.

I was just cleared to stop taking blood thinners. My TOS specialist recommends I stay on them for life unless I decide on the surgery. My hematologist said that she feels it is safe for me to stop them and see what happens...maybe I won't get another blood clot.

My TOS specialist is based out of the Vascular institute of the Rockies. Although I see her point of view of surgery veing the only fix, I think I want to wait and  see what happens before jumping the gun. I've had zero pain this entire time. I have great blood flow in my entire arm, proved via ultrasound. So I'm holding hope that my exercise regimen might be able to shift some things around in there and create enough space for my vein.  

I had my first rib resection a a week ago, seems to be healing fine. Still sore, obviously. But, the thing that hurts the worst is my T3 vertebrae. Whether I cough, sneeze or even take a deep breath. It is giving me the most pain. Anyone else have this problem?

Does anyone in this forum climb? 

Dane, after a week, I definitely had some general torso discomfort that was worse in certain positions or with deep breaths. Nothing super localized to a specific vertebrate, though - most of my specific shooting pains were around the armpit incision, and pain upon motion or deep breaths gradually improved until I had full range of motion again after 2-3 weeks. Most helpful things for me were daily gentle stretching and that lung capacity meter/exercise tool. The lung capacity breathing thing was awesome for momentary pain relief as well. Deep breaths seemed to “unstick” some chest pains release some stress.

​Hope that helps! Sounds like something to keep track of and mention to your doc in surgery/PT followups.

I was diagnosed with bilateral TOS (both arterial and venous) a couple of years ago. I'm very active, currently mostly cycling.
I started getting symptoms in my early 40's (now 48) while running - mostly numbness and pain in the first affected arm and shoulder. Eventually I became symptomatic in both arms. I stopped all upper body exercise (swimming, pushups and light weights) which helped, but didn't reverse the symptoms. I've tried physio to no avail. I'm booked for my first of two surgeries on Nov 15 (second one TBD). I have been lucky to have not developed a clot yet. That possibly might be because it turns out I have a defect in blood clotting, discovered in my pre-surgical workup, but it also presents a complication for surgery. My surgeon is a leading expert in TOS, the head of vascular surgery at his hospital, and TOS is the main surgery he does, which is a bit reassuring. He'll be using the supraclavicular approach, and to be honest, I don't care about the scar(s).

I must say that I am not looking forward to this. I've been putting it off for a few years, but having increased symptoms, and having lost the ability to do many of the things I love like swimming (I'm not a climber), not sleeping well due to numbness, and having the threat of thrombosis hanging over my head made me feel that the surgery was necessary.

I'm wondering how fast some of you were able to return to exercises like riding on a stationary bike/bike trainer post surgery?

Troy K wrote: I was diagnosed with bilateral TOS (both arterial and venous) a couple of years ago. I'm very active, currently mostly cycling.
I started getting symptoms in my early 40's (now 48) while running - mostly numbness and pain in the first affected arm and shoulder. Eventually I became symptomatic in both arms. I stopped all upper body exercise (swimming, pushups and light weights) which helped, but didn't reverse the symptoms. I've tried physio to no avail. I'm booked for my first of two surgeries on Nov 15 (second one TBD). I have been lucky to have not developed a clot yet. That possibly might be because it turns out I have a defect in blood clotting, discovered in my pre-surgical workup, but it also presents a complication for surgery. My surgeon is a leading expert in TOS, the head of vascular surgery at his hospital, and TOS is the main surgery he does, which is a bit reassuring. He'll be using the supraclavicular approach, and to be honest, I don't care about the scar(s).

I must say that I am not looking forward to this. I've been putting it off for a few years, but having increased symptoms, and having lost the ability to do many of the things I love like swimming (I'm not a climber), not sleeping well due to numbness, and having the threat of thrombosis hanging over my head made me feel that the surgery was necessary.

I'm wondering how fast some of you were able to return to exercises like riding on a stationary bike/bike trainer post surgery?

Walks around the block in a week. Trotting around the block 2-3 weeks. Stationary bike and running might be closer to a month imo due to the position on your bod and weight on your arms. Check yourself into PT asap after the surgery and you'll get some good excersizes to keep ya active and healed up. 

Keep in mind everyone recovery will be really different. I had almost full range of motion in a little under two weeks which is on the quicker side of things. Others might take a month or longer. Load up on good books to read get used to doing short time frame boring excersizes like crunches etc... If you "have" to work out. In reality the time spent on the couch will be tough and seem like a long time off if your active, but keep your eye on the end prize which is a full recovery. Good luck mang 

If the pain isn't too bad, I'l probably be going bonkers without my bike workouts. I definitely plan on the PT. I feel my age is going to be working against me in healing up. It feels like injuries take forever to heal at 48 vs 20 years ago.
I've had the condition my whole life - I can recall being a young kid and not being able to hold my arms above my head for long, but somehow I made it this far while swim training hard for a period of 5 years in my 30's (triathlon), and a lifetime of fly fishing without getting a clot.

The biggest bummer is that I'll have to repeat the whole thing all over again when I get the other (left) side done. It's bothering me less during low activity periods, but the left side is the one where my whole arm and shoulder goes numb and gets painful under high running efforts. When I first brought this to the attention of my doc, I was convinced it was cardiac-related!
I wanted my surgeon to do both shoulders at the same time to get it over with, but he flatly refused citing the complexity of the surgery (he does only one per day max) and the extreme pain he promised I was likely to be in, plus the long period of physical limitations post surgery during recovery. Alas.

Anyways, just bought myself a shiny new bike as a goal to get recovered and get riding on asap after surgery.

Had my first surgery 6 days ago (I need both sides done for vascular TOS).

I spent 2 days in the hospital. Surgery went smoothly on the right side, supraclavicular approach with no complications. Anterior and medius scalene muscles were removed along with the first rib. From reading the surgery report, my anterior scalene muscle was badly hypertrophied, the medius also, but not as badly. These two were the culprits cutting off the blood flow against the rib. The astounding thing was that I've actually had very little surgery site pain. Needed no narcotics at all, even right after surgery. Only took some tylenol. I've also had complete range of motion since surgery with no pain - a little weak for sure, but not painful.I started the stretching and exercises on the third day. I was able to do dishes and other easy things with my arm by 4th day post surgery. Not bearing any weights >5lbs for sure though! I did have some nerve discomfort along my arm that was aggravated by using a mouse and keyboard, so I've stopped that, and the neurogenic pain has subsided by today.

One downside has been that I was quite sick with a bad cold virus for almost 2 weeks and had just started to recover prior to surgery (mild fever and bad fatigue), so I was quite depleted physically before being walloped by the operation. Doing more than walking around the block once or twice still leaves my heart pounding and me feeling off, so I'm taking it easy (although secretly I want to saddle up on my bike trainer in totally vertical position, no arms down on the bars, and peddle a few km extremely easy). I've had some nasty insomnia post surgery as well, partly from the body stress and partly because it is difficult to find a good sleeping position that doesn't aggravate things, and I hate sleeping sitting upright.

Overall, so far, so good.

Troy K wrote: 
One downside has been that I was quite sick with a bad cold virus for almost 2 weeks and had just started to recover prior to surgery (mild fever and bad fatigue), so I was quite depleted physically before being walloped by the operation. Doing more than walking around the block once or twice still leaves my heart pounding and me feeling off, so I'm taking it easy (although secretly I want to saddle up on my bike trainer in totally vertical position, no arms down on the bars, and peddle a few km extremely easy). I've had some nasty insomnia post surgery as well, partly from the body stress and partly because it is difficult to find a good sleeping position that doesn't aggravate things, and I hate sleeping sitting upright.

Glad your feeling good man but dont be surprised that walking around the block leaves your heart pounding. You just had garden type loppers in your chest cutting a rib out. Took me over 8 weeks to feel like i had my "normal" energy back. After any big procedure your body is going to take time to adjust - this one is no different.

Glad your doing well tho.

Troy K wrote: Had my first surgery 6 days ago (I need both sides done for vascular TOS).

I spent 2 days in the hospital. Surgery went smoothly on the right side, supraclavicular approach with no complications. Anterior and medius scalene muscles were removed along with the first rib. From reading the surgery report, my anterior scalene muscle was badly hypertrophied, the medius also, but not as badly. These two were the culprits cutting off the blood flow against the rib. The astounding thing was that I've actually had very little surgery site pain. Needed no narcotics at all, even right after surgery. Only took some tylenol. I've also had complete range of motion since surgery with no pain - a little weak for sure, but not painful.I started the stretching and exercises on the third day. I was able to do dishes and other easy things with my arm by 4th day post surgery. Not bearing any weights >5lbs for sure though! I did have some nerve discomfort along my arm that was aggravated by using a mouse and keyboard, so I've stopped that, and the neurogenic pain has subsided by today.

One downside has been that I was quite sick with a bad cold virus for almost 2 weeks and had just started to recover prior to surgery (mild fever and bad fatigue), so I was quite depleted physically before being walloped by the operation. Doing more than walking around the block once or twice still leaves my heart pounding and me feeling off, so I'm taking it easy (although secretly I want to saddle up on my bike trainer in totally vertical position, no arms down on the bars, and peddle a few km extremely easy). I've had some nasty insomnia post surgery as well, partly from the body stress and partly because it is difficult to find a good sleeping position that doesn't aggravate things, and I hate sleeping sitting upright.

Overall, so far, so good.

Hey Troy,

this looks like quite good results so far!

I might have the same surgery next year. The only sleeping position that works for me is flat on my back (which is hard! since i love to sleep on my sides)

I wonder how having the scalene muscles removed feels like. Do you breath differently? Is it harder/easier to move your head now on that side?
Is the neck/throat feeling different on that side?

Cheers,
Sascha

Hi Sascha,

Things continue to improve for me at a rapid clip. I think that one thing that helped is that surgeon is very experienced with the particular operation (has done >300), and was exceedingly careful. I was on the table for 4 hours which is longer than the average first rib resection and scalenectomy with no extras like venous reconstruction. I'm sure it also helped that I've never had a clot in either arm and the vessels were in ok shape despite the TOS being an almost life-long issue for me. I experienced no pneumo or hemo-thorax when the rib was removed, either of which will really knock down your breathing post-surgery.

My chest was a bit tight and breathing slightly restricted after the surgery but certainly nothing like what many people experience. I think the supraclavicular approach is supposed to be better for chest pain as well. My surgeon is a strong proponent of the supraclavicular approach because it provides superior access and visualization of the route, nerves, etc. From what I have read, I think there are slightly lower complication rates with going in over the clavicle as well. Some patients prefer the under-arm route because the scar is less visible but I'd happily trade less pain and potentially fewer complications for a visible scar. I also don't care about scars at all - at 48 I've got plenty from bike crashes and other accidents. Just a side-effect of living.

If you've got to get it done, find a surgeon who has done many of the operations and specializes in it - I think that is KEY. It is a tricky surgery and not one I would trust to a non-specialist.

The last two nights I've been able to side sleep (surgery side up) with a good supportive pillow that keeps my head in a neutral position (not extended either up or down), and a cuddling a pillow to support the arm on my surgery side.

Since about 5-6 days post-surgery, I've been able to breath as deeply as I used to and can't feel any difference with the missing scalenes. That may be different depending on which muscles need to be removed - in my case it was only the anterior and medius scalenes. I didn't need any pain meds at all after the surgery which I was told is a little unusual. It's not because I was trying to tough out the pain, I just didn't have much. I think that comes down to a combination of a great, careful surgeon, and individual differences in how one's body responds to certain traumas. I certainly have felt strong pain from other events.

There is a tight and inflamed muscle running up the side of my neck, which I believe is the remaining, posterior scalene. It helps to ice it and gently massage it multiple times per day. Do the prescribed stretching exercises for all the muscle groups in the area is helping too. It's definitely been getting better the last few days.

The only serious effect I had from the surgery was that my O2 sats were down for about 6 days, dropping as low as 93-94% at some points. Not clear why, possibly due to the stress of the surgery on top of the illness I was recovering from when I went under the knife. Sats seem to have rebounded now though and my energy levels are way up the last 24 hrs.

Overall I'm happy with how the surgery went, although I admit that I seem to be having a quicker recovery than most. I'm planning to get onto my trainer-mounted bike today and gently peddle a few km while sitting vertically (not with hands down on the bars). Next question for me will be as to when to schedule the other side...

Hey Troy! Who did your surgery? 

Has anyone chosen not to get the surgery?? Or opted to postpone the surgery in order to try other modalities first?

My next question is for anyone who has had this surgery 2+ years ago:

How does your body feel? Are you back to 100%? Are there any symptoms that have lingered or were made worse after the surgery?

Hi Amanda - I live in Toronto. My surgery was done at St Michael's hospital by the head of vascular surgery, Dr. Mohammed Al-Omran. He specializes in TOS surgery.